Rockin' Ramadhan

Salam Ramadhan everyone!

Coincidently it falls on 1st August 2011, it's a good booster because we can stock up Baskin Robbins on 31st July!



We went to BR in Giza as early as 10am and about 5 people there, don't have to push around or queing! The only drawback is it's quite a small outlet, so the flavour is not that extensive. Even the normal Old Fashioned Butter Pecan wasn't available.

This time we bought 4 quartz! So tamak! It's Pistachio Almond, World Class Chocolate, and Baseball Nut x 2. Yum yum, Baseball Nut is my current flavour.

Talking about fasting month, how's your preparation? I wanted to go to talk or seminar before this, to prepare myself. You know, as a catalyzer to do my best this Ramadhan, baru la semangat kan? But things has been very chaotic this few weeks and have to sail through this without much preparation.

Mentally I'm ready, only on the physical side, I'm very tired lately. Feel so heavy and with Zahra yg a bit on emotional side. Banyak tantrums and very angry, I think it's because of the medicine as I ask around patients yg pernah Nephrotic, yes they have the emotional side effect. Hopefully I manage to puasa penuh this year, ameen...

Wishing you guys a very meaningful Ramadhan. May we achieve a better Ramadhan this year. It's a good time to shape ourselves to be a better Muslims, and may it lasts throughout our life, not only for a month ;)




I

zahra and Nephrotic Syndrome: Allergy Drama

We had another scare last Thursday. Zahra had a few allergy bumps around 145am but since it's nothing serious, I just rub her and put her back to sleep. In the morning, the bumps went away, so I thought it must be something she had last dinner, even though we ate pretty much the same food. The only different is the mint chicken that I gave her, it is cooked with yogurt but I already wash the sauce and gave her only the chicken.

During lunch time, I received a call from her baby sitter that some red patches appeared around her cheek, legs and hands. It's not that bad according to her, so I didn't go and take a look. Furthernore, both of us had training at TTC that time. We called Dr Anushree and she said it looks like allergy reaction if it comes and go. During evening when we picked her, the patches gone, so okay lah..

She had her usual dinner and suddenly the red patches reappear. It seems like it flares everytime after meal. It's so weird because she is on Prednisolone, it's like the strongest medicine and is also used to counter allergy, and yet, she has allergy? Since she is not showing any discomfort, I just let it be and around 10pm it went away.

She had her before sleep milk and I was woken up at 1245am by a very sore boobs. One thing about Zahra, she won't cry if she feels uncomfortable during sleep, instead she will keep on latching and bite my boobs. I was tired as well and fell asleep and didn't realize she was sucking hard, almost gritting actually, hence the soreness.

When I pull my boob, she will cry, then I knew it she still not in deep sleep and it's so unusual of her, so I switched on the lights and so panic to see her whole body is covered with red patches!

We've been dealing with allergy few times already so normally I won't be that worry but since she is in Nephrotic treatment, I am afraid this is something else so we quickly rushed to emergency at TMC.

We brought along the steroid treatment letter and the Dr on duty checks her up and made a call to Dr Anushree to brief her. Since her airways is clear, she is given antihistsmine medicine to stop the allergy reaction. Poor my baby, has to take another medicine...

According to the Dr, yes, Prednisolone is used to treat allergy, but since Zahra is on high dose of Prednisolone for over a month now, it will bring down her immune system, hence she is easily attacked or infected. That's the drawside of the steroid. The allergy can be triggered by anything, food, insect bites, dust, pets, etc..as she is totally immunocompromised.

The patches gone after 2 dose of antihistamine (that will be 16 hour gaps, 8 hour per dose) but I decided to give her 3 complete doses to make sure it's gone for real. Alhamdulillah, no flare after she taken any food after she finished the medicine.

Kesian my baby, she's so vulnerable now.... Not only the allergy, she had a thick discharge from her eyes after that. I read online and it's because conjunctivitis bacteria or her body is dispelling toxin. But the discharge gradually reduced today so we decided not to go to doctor yet as she will have her checkups this Monday.

On the protein reading (test done at home) is very confusing. After the hike at 4+, it reduced to 2+ yesterday, and today back to 3+ *sigh*.

I hope all is well this Monday. Aminnnn..

Zahra and Nephrotic Syndrome - The Update

It has been confirmed the reading shoot back to 4+ which is weird because she still within treatment and it is an indicator of steroid resistant but at the same time conflicting because she's responding to the steroid well for the past 1 month.

An appointment has been made with Nefrologist team in HKL on 8th August 2011. We don't know how it's going to be yet, most probably change the medication which only can be prescribed by the Nefrologist or continue with higher dose of Prednisolone. That's what we are told for now but still up to the Nefrologist. How the Nefrologist going to diagnose/check, I still have no idea. Hopefully nothing scary.

As for now, we are continuing the 25mg x 5ml Prednisolone and Dr Anushree will see Zahra next Monday for some blood test.

Wish us luck!

The BoboiBoy Girl

Ok, enough of sedih-sedih. Lets talk about happy thing to kick the morning :D

We went to Sushi King Ikano last Saturday and below is a couple of happy faces of Zahra Elena! I love these pics so much she is not the photogenic type and most of the time her pic will turn out like a boy! Haha.

But she was very happy last weekend, most probably because it is 9PM already. That's the normal her, she will be all giggling and happy before going to bed. It's like she's on high or something.

Eating edamame and udon!

Singing something - swinging her head left and right hehe.

After the dinner I took her walking around and she went to the Speedy next to the Sushi King (because that's where kids like to be sbb ada TV haha) and look what she found:

Boboi Boy!

It's her current favourite show and she spotted it by herself! Mata Zahra ni boleh tahan tajam, kalau nampak mickey mouse ke boboiboy ke, barney ke..cepat giler. I mean, I will have a hard time to spot those character especially if they are small. Maybe sebab mata mummy melilau tengok baju kut hehe.

Oh ya, the moment she saw the CDs, she shouted:

"Boboiboyyyyyyyy"

And I pun pulun la cari where is it where is it and tak sempat nak cari, she already showing me the place :D

And fished out the whole CDs and give them to my sister. I am too heavy to chase her around, thank God my sister was with us that night, she's keeping an eye on her.

If you haven't heard of this cartoon, it's an animation series by Animonstamedia - a local product! *proud to be Malaysian!*. Cerita dia best okkkk! Haha. Sometimes me pulak yg ketagih to watch it instead of Zahra.


Below is the making of the soundtrack. Yuri Wong (the composer) is so handsome kan? Don't cerca my taste ok..but well, most of girls senang cair with org yg macam cool and pandai main gitar kan? Hahaha.


*off topic*
Oh oh oh do you know that MrComot plays guitar too? In fact, he plays classical. Wowwwwww.. Ok, I didn't know that until after we gotten married. He never la nak show off dia pandai main ke apa.. and he doesn't have the time pun. But yeah..he plays classical! *heart*


Ok enjoy the music video and happy Tuesday everyone ;)

Zahra and Nephrotic Syndrome - A relapse?

I wanted to rant about my shiny black push present, but I got bad news this morning..so..hmm yeah, lets talk about the bad news first.

As per her progress last week, we pretty much excited about her condition and send the urine to TMC this morning with peace of mine.. until this noon when Dr Anushree called us up and inform us that her reading is bad. It's 4+!! The exact count is 5.0mg, while last week was 0.75mg. Such a big difference.

So it's most probably a relapse. Ok, I get it, Nephrotic syndrome can reoccur, but a relapse within a treatment? And she hasn't even finish the treatment yet.

We have to repeat the urine test tomorrow to confirm on this issue, and if it maintains at 4+, she has to be referred to HKL for nefrologist (kidney expert) for further diagnose.

It's too much for me to absorb.

I was stunned at first, part of me in denial, part of it just don't know what to think.. or what to expect. I mean, if we are not dealing with straight forward Nephrotic, what it's gonna be? How are they going to take kidney biopsy from Zahra? Are they going to poke her around?

After about an hour in haze, I burst out crying because I was too sad. And can't stop crying for ther next hour.

Now I'm all alright :)

Hopefully the reading was wrong. We gave the sample 1 1/2 hours late and maybe it's contaminated. Well, urine within 2 hours is acceptable, but can't think too much now, just wait for tomorrow's result pulak.

I'll rant again later.